Ashley's Story

She will leave fingerprints all over your heart



Its been over two weeks now. Finally I feel as though the "dust is settling" and we are relaxing into a new rhythm, a new routine. The first few days were frightening. Very new. Very not normal. Now we have figured out to live this new life and we are doing ok. Its a blessing to be able to say that. We are ok.

Ash has had some rough moments. Some long nights. I have had some rough moments. Some long nights. This morning as I showered I stood there and realized how very rested I felt. I'm sleeping again. No longer spending the night time hours in tears as I stare into the face of my daughter. I can watch her fall asleep and then close my eyes and sleep too. Its nice.

No, life is not all "right" again in our part of the world. Its still unsure. On a daily basis we have no idea what will happen with Ashely Kate, but something has happened that makes life different now. I don't know how to explain it other than saying, "she's home again". I think thats what the difference is. She is home and at peace. She's not afraid. She's not nervous. She knows where she is and she knows those who surround her.

I think that Ash is having a good week. She looks stronger to us. She looks happier. She looks beautiful. The med adjustment is helping. Today I'm hoping to wean her medications even more. The less and less of the drugs... the more and more of Ash we begin to see in her eyes. This morning I look into her face and see her. I really do. She's not as clouded or as distant as she was a few days ago. I see her sparkle. Its really her. I can't tell you how nice it is to know that through all of this she is still there. She is coming back to us. She really is. She is awake more this week. She is communicating more and more this week. She is sitting up for a few minutes at a time without assistance. She can sit and rock in her little chair. She can sit in her car seat for the drives back and forth to Shreveport without being too uncomfortable. There were days where I was not so sure I could show transplant that she was indeed living again. Functioning. Surviving. Now, I feel confident that we are indeed getting there. She is going to be able to show them that yes, she has a life again. A life that is worth saving.

I watched my oldest daughter lean down and kiss my youngest yesterday as she was resting on the couch. My heart smiled at the sight. The words spoken from Allison to Ashely Kate were sweet, genuine, heart felt. Just a big sister telling her little sister how much she was loved. I watched my almost 15 year old son climb up in a tiny bed next to his baby sister last night and I had to fight the tears from falling. He just sat. Close enough to her to make it all ok for both of them in the late night hours.

I can't describe how good it feels to know that Dave and I gave those moments back to the two of them. Bringing her home enables my kids to love on each other in the hardest of times. They needed it. They really need each other to get through this.

Ash has a long way to go. She's got a lot to accomplish before we can take her back to Omaha for an evaluation. It is not going to be an easy journey getting her there and it won't be easy once she is there. We have another evaluation to get through. We have to face the very same "professionals" who recommend denial of transplant to our team because of her "inability to contribute to society". Its a huge obstacle that lies in our path to re-transplant, but every single day I am encouraged by the progress Ash is making. Yes, her liver is dying. It really is. But...her spirit is surviving. That speaks VOLUMES to us as her parents.

I just wanted to let you all know that life is settling into a an ok place for us as we face what lies ahead. The new/old place that we have fallen into is strangely familiar. Our family, our baby, has lived with liver disease before. Our little one survived it once while waiting for organs and we are as hopeful as we can possibly be that she will do it again. Thank you so very much for your constant presence in this place. Thank you for your unending prayers and support. We are figuring life out and the tears are not a constant presence in our home. We do still cry, but we do laugh. We do love. We do live. Praise God that we are able to be together as we do each of those things. Praise HIM!


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